Jack's Surgery, Part Two

Friday Jack was very uncomfortable because his tummy was distended. We had to work through some constipation issues with Jack, which had us all a little worried because he was in so much discomfort. We spent Saturday waiting and waiting and waiting to leave the ICU. Jack was ready to be moved, but we had to wait on a room to open up for him in the heart center. Finally a room became available for him that evening.

Having a room in the heart center was amazing! There was a fold out couch and a cot so Gordy and I could both stay with Jack during the night. We also had our own bathroom and shower which was such a blessing. The next day we checked out of the Ronald McDonald House so another family who was in greater need could use our room.

Jack didn't seem to mind the wait. He was so entertained by his grandparents. Gramma sang him a sweet lullaby that would soothe him. He especially liked being able to watch Tangled with Gramma and Grandpa Lake and Gummy Bears with Lolly and Pop on their Zooms and iPads. Of course he had lots of toys from home to keep him company.

The first day in the heart center was also a little stressful. For an entire day Jack would not eat. We tried everything... baby food, nursing, bottle, juice, water. He was just not interested. We think that it was because his throat was sore from being on the ventilator and because he was uncomfortable with his chest tube in. His eyes were sunken and and the soft spot on his head was sinking in too. The doctors were just about to start him on I.V. fluids again when Jack decided that it was time to eat. Thank goodness.

It turns out that it was a combination of things keeping him from eating. He was on morphine still because of the chest tube and once the docs pulled that pesky thing out, Jack didn't need morphine any more. Isn't it crazy that he was only on morphine for two days after having open heart surgery? Without the chest tube he only needs children's Tylenol to help with the pain. Once the morphine wore off he was much more cooperative with nursing. Not to mention it was much easier for us to hold him, which was really nice.

The white patch on his belly is where his chest tube was. The chest tube actually went all the way inside him and wrapped around his heart to drain the extra fluid that accumulated there. When they pulled it out we were all shocked at how long it was.

With the chest tube out, and once he started eating he was a completely different kid. We started seeing more and more of our old Jack. It wasn't long before he started to get really fussy, and Gordy figured out that Jack was just really tired of being in the same room. So we hooked Jack up to the portable monitor and cruised the hallways. He went on lots of walks...

... and even more wagon rides. He LOVED riding in the wagon!

One thing is for sure, where ever Jack went, he had a crowd of adoring fans following him! One by one his 4 I.V.'s were taken out, pace maker removed, chest tube taken out, and pretty soon we were ready to go home. We were thrilled to find out that Jack could go home on day FOUR after surgery when the typical recovery time for this surgery is 7-10 days.

The Wilson's loading up the cars while the Lake's waited for Rx refills.

Jack was really happy to be going home...

...really really happy....

... and this is what we came home to. So sweet of our friends to welcome Jack home! My parents bought us pizza and ben and jerry's to celebrate! Gordon and Sandy left the next day and my parents stayed an extra day to help us get settled in. We are so so grateful for all of the help they gave to us throughout the entire week.

I would describe the first few days being home like having a baby with colic, but having a set of six month old lungs to back it up. His sleep schedule was so thrown off. Every day is getting better and better though, and now Jack is back to his old smiley self most of the time.

If ever Jack has a time in his life when he doubts his capabilities or what he can accomplish, I can't wait to share these pictures with him and show him just how strong he can be. Show him how many people love him and are in his corner. Show him that even as a six month old baby he had courage and had a smile on his face even when things got rough. Show him that miracles can and do happen and that when we put our trust in Heavenly Father, things always turn out for the best. He has been such a teacher to me through this entire process.

Jack's Surgery

Spending a few days in a children's hospital will teach you a few things; things about yourself, your relationship with your family, and especially your relationship with God. A good friend told us that human suffering can be compared to a gas pumped into a room. It doesn't matter how much gas is pumped in, or what kind it is, it will expand to fill the entire space. I've really learned the truth of that this week. Our suffering over Jack's surgery is every bit as consuming to us as it is to the mom we spoke to in the surgical waiting area who was here because her little guy had back to back ear infections. This hospital has been a holy place to me these past few days. I've learned so much about compassion and what it means to care for people you do not know. It is such a humbling experience to have your life put into perspective. As we've been in the ICU we've spoken to parents who have to take their children off of life support, parents who's children have to have open heart surgeries every year, parents who's kids have been abused by some one. I've walked these hallways and noticed the rooms with babies who have no visitors, no one to stroke their head and sing to them when the wake up and are frightened. My life has really been put in perspective. I've been taught so much about service and compassion as I've watched nurses stand on their feet for 12 hours and never leave Jack's side. I've learned so much about gratitude as I now have an added appreciation for the blessings of living in a day where we have the technology to accomplish open heart surgery on a six month old. I have such appreciation for Jack's surgeon who was so incredible. He is such a busy man and has personally checked on Jack six or seven times since his surgery. Most of all I've learned that we are truly blessed, not only with the good things in our life, but for the challenges we have been given. This has been a rough experience at times but I am in such awe that Heavenly Father knows exactly what we can handle and what Jack is capable of handling. I have such a testimony that he has guided the actions of every one helping Jack these past few days.

Okay, so on to the juicy stuff. For those of you who do not know, Jack was born with a congenital heart defect called tetralogy of Fallot. Below is a diagram comparing what Jack's heart looked like compared to a normal heart. Basically he had a hole in between his right and left chambers (called a ventricular septal defect or VSD) which confused the flow of oxygenated and de-oxygenated blood. This confused blood then went into his pulmonary which was narrowed. Because the valve was narrowed the right side of the heart had to work harder to pump the blood so the muscle on the right side thickened more than the left side (just like if you were to lift weights with your right arm only and never to anything with your left). Without surgical treatment the chances of Jack living until age 30 were about 6%. Not good enough for us, so surgery it is. So, long story short the surgery was to patch the hole between the right and left chambers so that the blood would not confuse, and to widen his pulmonary valve so that they right side of the heart would not have to work so hard. There was a chance that Jack would have to have a replacement valve, which would have meant more of this surgery every 10-15 years. BUT the surgeon was able to salvage his valve by cutting slits and sewing in strips of gortex which his tissue will cover as he grows. Hopefully this means one and only one surgery for our little Jack. He will have to have life time check ups with the cardiologist to make sure that his repair is functioning as it should. But in the grand scheme of things that is no biggie.

The day before we had his surgery we had a 7 hour day at the hospital doing pre-op. The worst part of that entire experience was that they had to draw blood from Jack. Since he is so little and his veins are so tiny, they had to draw it from the very visible veins in his head. It sounds as bad as it was. They had to stick him three different times in his head before they got the minimum amount of blood they needed. It only took about ten minutes after that before we got him all calmed down and he was all smiles in no time at all. The day of pre-op was filled with other things like chest x-rays, meeting the anesthesiologist, nurse practitioners, surgeon, and getting a tour of the ICU. Every one we met was very nice and we left feeling like Jack was going to be in very capable hands. That night Jack had a beautiful blessing given to him by Gordy and Jack's grandpas.

The day of surgery we woke up at 5 AM. Jack woke up in the most precious of all moods. I sure love my little guy! We left the Ronald McDonald House and walked to the hospital to get him checked in at 6AM. Then we sat with him while the nurses checked his vitals and we waited for him to go back for surgery. This part got a little icky. Jack was extra tired from waking up so early and it was so close to his surgery so I couldn't feed him and he was getting super hungry. Luckily, Gordy was able to work his super dad magic and he got Jack to fall asleep for most of the waiting time.

This is Jack in his girlie hospital gown waiting to go back. They didn't have any thing more suited for a man child, so he ended up with pink and orange Nemo. He didn't really care that much. When the nurse came to get him he was so calm. He didn't even fuss when we handed him off to the nurse. Gordy told the nurse, "Lady, you better make a run for it before someone looses it." I think we were more worried about loosing it ourselves. We watched her round the last corner before they disappeared out of our sight. Then it was just a waiting game. We got updates every hour on the hour about how things were going with the surgery. Some how, the time flew by. The surgery was scheduled to last for six hours, but ended up finishing in five hours. Yet another miracle. I'm not joking when I say that our entire experience has been a miracle so far. I was surprisingly calm the entire day. I know I had an added measure of the Holy Ghost that day reassuring me that everything would be okay. I had an over whelming feeling that they would be able to salvage his valve and spare him from multiple surgeries in the future. I just felt like the day of surgery was the day Heavenly Father and Jack's surgical team were going to save his life. Such a blessing to know we had so many prayers for Jack and for us. I felt the power of prayer all day long and I still continue to feel it now through Jack's recovery.

Another miracle is that Jack has responded so well to the surgical treatment he has received. They told us to expect Jack to be on the ventilator over night, but he was doing so well that they were able to remove it before we were even allowed to go back and see him! It was such a blessing to see him breathing on his own. Some of the biggest problems we have encountered have been very minor when we are speaking of big picture things. He had a reaction to the tape that was holding the dressing onto his incision, he's been constipated and very uncomfortable because of gas pains, and we found out that tylenol with codine makes him throw up. Overall, those are very very minor obstacles, even though it breaks our heart to see him hurt in any way. Dr. Turrintine, Jack's surgeon, even told me this morning that Jack is the poster child for how they want some one to react to surgery.

It's the little things now that are binging us such joy and comfort. Feeding Jack a bottle was such a relief. My arms have been aching to hold him and last night at close to midnight I was finally allowed to rock him to sleep. Man, that felt good for the both of us. Now we are having fun watching him as he has a free hand to play with toys and smiles at us occasionally when we read him his favorite books and play games with him.

It's pretty intense how many medications, tubes, and machines Jack's care has required. But, he is currently not hooked up to any i.v.'s fluids. Baby steps mean so much to us!

Jack was a little swollen, but he is mostly back to looking like his normal self now. When he was swollen and his mouth was dry he would make these really cute duck lips at us. He doesn't even know how cute he is!

This last picture is of Jack Saturday morning, one and a half days after surgery. Isn't it a miracle how quickly he has bounced back?!

Things here are going great. Jack is ready to leave the ICU and go up to the Heart Center. We are just waiting for a room to open up for him. Thank you so much to every one who has prayed for us and has sent their good wishes and positive thoughts our way. We love you all and could not have made it through this experience without your love and support. Thank you a million times over!

Jack, 6 months

Jack is SIX months! Want to know how we celebrated his half birthday? He got a huge up grade and an extended warranty on his life! Dr. Turrentine fixed our little boy's heart on his six month birthday, but that is a story for another post...

This is how Jack spent a portion of his sixth month birthday. For most of the day he was heavily sedated... We knew that taking pictures on the actual day wasn't going to be the greatest, so we took some the night before his surgery (it was practically almost his monthly birthday). We decided to take them shirtless because that was the last day he won't have a scar on his chest. His eyes are pretty tired because we had a very long traumatic day of pre-op, but he still managed to pull out some award winning smiles. p.s. sorry some of them aren't oriented correctly. My top priority right now isn't taking time to load pictures and spend time flipping/cropping/eliminating red eye, but Jack is sleeping now so I thought I would do a quick post.

This is Jack early, early Thursday morning before heading to the hospital.

Some fun things about Jack this month... first and foremost, his heartbeat no longer sounds like a washing machine.

He thinks he doesn't know how to crawl, but he does. We have a video monitor and we watch him crawl in his crib. He ONLY does it in his crib. Silly boy...

His favorite book is "Are you my Mother?". I read it to him in this really annoying high pitched nasally voice. I realize it's annoying, heck I even get on my own nerves reading it like that, but Jack LOVES it, so I keep doing it. It even got him smiling today in the intensive care unit. I don't care who I bug, when he smiles it melts all my worries...

His favorite toy is a tie between his bumble bee that vibrates and this box with different activities on each side (similar to what dentists usually have in the waiting room). He likes to turn the cogs and wheels with his feet.

Jack is eating solids. So far he has had rice cereal, stage one peas, and stage one carrots. We tried to hold off on solids until after his surgery, but he was so dang interested every time he saw one of us eating that we couldn't put it off any longer. He loves his solids.

Jack is fascinated with my dad. Since my parents got to spend a few days with us before Jack's surgery he really got to bond with his grandpa. When my dad is in the room it is hard for Jack to look away. It's really quite darling.

Jack is starting to reach for people he wants. This is also something that will melt your heart.

Jack LOVES the camera. As soon as he sees one he whips out a gummy little grin. I don't know how he knows you are supposed to do this... I guess he is just a natural.

Darn we love this little guy. I can't believe we have already had him for six months, and yet it's hard to remember what life was life before he joined our family. He fills us with such joy.

1L of a Ride

Well, we did it! After a year's worth of twelve hour days, law papers, Gordy practically living in his carol at the library, and TWO finals weeks we can finally say that we made it through Gordy's first year of law school... and you can definitely say that it was 1L of a ride! The 1L year is the most dreaded of all three years (or so they say). This is such a major accomplishment for Gordy and we are so proud of him. I can hardly believe that we have already made it through 1/3 of our time here in Bloomington. I feel like we are going to blink and law school is going to be over...

To celebrate finals being over we decided to have a little outing with the Castellano clan. We went over to campus (because I don't think that the guys had enough on campus time yet) and we took pics of each other's families. We went to Dunn woods, a little forest in the center of IU campus to take pictures. I was so happy that we picked this location. Heather did a great job snapping away and Dan did a great job too, getting Jack to smile in all of the pictures. I would also like to give props to Jack for being particularly cute and waiting until we were in the car leaving to have a melt down. Seriously, the stars aligned for us to get some great shots.

So without further ado.... Here are some of our favs

In other news, my parents made it in early this morning (4:30 AM) and Gordy's parents are arriving on Tuesday. It is so nice of our parent's to come help and support us while Jack has his surgery next week. We love them for sacrificing to come out here to Indiana and make sure we are taken care of. We definitely have the best parents in the entire world.

Next Thursday is THE big day! Little man is getting his heart fixed up! I think we are just going to be holding our breath until Friday. We have great faith that all will be well with him, but we are still sad that our sweet little guy will have to go through such a big ordeal he doesn't understand. It is all for the best though, that's what we keep reminding ourselves.